I am Red. I am a Survivor. This is my journey.

Family

Although slightly better, I still spent the day in bed. I cannot seem to escape this dang headache though thankfully the new medicine keeps it at bay for a few hours. As soon as it wears off though, it creep back in. Ugh. It seriously sucks.

I went to bed feeling pretty good LAST night but woke up every 4 hours, presumably when the medicine wore off, in tears and unable to sleep until the medicine kicked in. There’s been a lot of prayers for relief and thankfully God has been answering them with quick relief of the medicine kicking in. This morning was rough but the medicine allowed me to make it through my draining without issue – another 600 ml there.

My husband made me chicken noodle soup – Ms Gras – which I can’t give up. Every time I have a cold or don’t feel well, that is my go-to soup. I know, I know, it’s probably horrible for me and filled with sodium. It’s what my momma always gave us and I just love that golden nugget. 😉 Of course he knows that I like to cut the water in half-ish and eat with some saltines. It felt so so good to eat a meal again and I chowed down. Yummy!!

Unfortunately, my stomach wasn’t happy that I ate as much as I did and it came back up. Sigh. Well I tried, right? Back to bed to sleep that away.

I do have an appetite today though so I had Joe grab some bread and jam in the hopes of adding that to my repertoire of crackers and bananas. I have also been seeing commercial after commercial for this particular cake at the local grocery store and I couldn’t get that out of my head. One of my coworkers introduced me to the Chantilly Cake at Publix during a potluck a few years ago and my goodness, is it worth every calorie-ridden delicious bite!!

So for dinner tonight, that is what I enjoyed! And ohhh, was it magnificent. I only ate a little because I don’t want to upset my tummy and so far it’s settling in nicely. And frankly, with the way my appetite has been lately, I’m just glad to keep something down.

I hope everyone has had a wonderful week and has great plans for the weekend. Though I’ve spent the week in bed, I hope to regain some sense of normalcy, energy and no flipping headache pain this weekend. I also plan to ship out the Meghan’s Cross orders – yay!!!

Thank you kindly to everyone who has checked in on me and prayed for me this week. And to those that I owe a response to, I appreciate your patience and I’ll get to it as soon as I can. 💚

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I can’t stop looking at these pictures from school today – and I love my big hug before he headed there!

Jacob received his “noculars” as a Christmas gift from Grandma & Grandpa. They were a thoughtful gift to help Jacob find fish when out fishing. He absolutely loves them and hasn’t really put them down since Christmas. He likes to take them everywhere and will often bring them in the car and tell us what he sees through them, including mommy and daddy.

For the last week, Jacob has been asking to take them to school. Typically when he does this with a toy or book, we can talk him out of it because he doesn’t want to lose them at school. And we promise to bring them with us when we pick him up. With the binoculars though, he wouldn’t take no for an answer. He was so adamant that we asked the teachers if it was OK that he kept them with him. They happily agreed (oh gosh, I sure hope he is sharing!) and I don’t think he’s missed a single day of bringing them with him since.

He accidentally left them at school last night and was a bit distraught over not having them. When we explained that he would find them at daycare when he went, he was anxious to hop in the car and get there. I imagine he found them soon after arrival and didn’t take them off much afterwards.

His school uploaded the pictures of him drawing on paper and then checking it out with his binoculars. I love it so much! They are helping him to embrace the use of his favorite toy and learn more about how he can use it. I love that he has such a wonderful imagination to go along with these binoculars and that his school helps him to foster that. I love that he loves a toy that has practical uses. I love that he enjoys his binoculars so much. I love everything about these pictures.

I love that I see these pictures and it makes me take a step back in my own life. It’s easy to get caught in the thick of things and lost in the weeds. It’s hard to pull yourself out and find yourself & your purpose again. Feeling as badly as I have recently, I have been losing myself in those very weeds, focusing solely on the pain and discomfort.

But there’s so much more to it. There’s all last week, which I am still not over emotionally. There is all of the incredible upcoming events and visits that are planned. There are the little things (that are actually quite big in the long run), that I want to incorporate into my everyday routine and have no excuse for why I keep pushing them out. There’s my purpose, my desire, that I want to focus on now, not later.

No, I can’t stop the way that I feel physically, but I can take a look through a different lens and see the things that I want to focus on. Things that I’ve been excited about but pushed aside because of the way that I have felt recently.

It took Jacob and his noculars to remind me that I am in control of the lens that I use to see life through. It’s time to start using the one that helps me focus on what’s truly important. It’s time to switch my lens.

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It’s a rainy day here in Central Florida…one that worked well with my impromptu nap this afternoon! It’s crazy to think that the week is already half over. I spent almost all weekend and a lot of this week “relaxing”. This really means that I’ve been too tired or uncomfortable to do anything. Thankfully my husband and little guy have been wonderful with taking care of me and ensuring my comfort.

I’ve consistently been draining a lot of fluid from my lung, which is drained every Monday, Wednesday and Friday. Last week ended at 850 ml, which was the amount drained again on Monday, and then 600 ml today. I owe a phone call to the doctor because Monday and today’s drainings hurt enough that I asked them to slow down and stop. I’m not sure if it’s close to the end and that’s why it hurts or if the tube is in a weird spot. It’s worth the ask, either way. The fluid causes discomfort and pain in my chest because it fills so quickly and in general, my back has been hurting a bit. I imagine this is also caused by the fluid but who knows.

My appetite is not awesome and I’m losing weight rather quickly because of it. This may be because of the mixing of chemo pills, Afinitor and Xeloda, so we will see how I feel during my week off, starting tomorrow. During my first trimester of pregnancy with Jacob, I had major food aversions. Everything seemed to upset my stomach and I basically lived off of cereal (this actually remained true throughout the rest of my pregnancy). Just the smell of foods would make my stomach turn. Even the times that I would crave something like crazy, I would eat it and immediately it would become unbearably unappetizing to me. This is reigning true now, only times about 10. Thank goodness for smoothies.

I’ve been able to get things done off of my to-do list, which helps me to feel accomplished, though my list is taking significantly longer to accomplish than it once did. I’m tired relatively quickly and often need to lay down after crossing a few things off. I’m grateful to be able to accomplish as much as I can, despite not feeling wonderful.

It’s frustrating. The pain, the discomfort, the utter exhaustion and the overall feeling of not being well…it sucks. Throughout most of the last year and a half, I have been able to push through the times that I’ve felt bad, knowing that I would eventually feel good again. I’m struggling with that right now. The times that I feel bad are becoming more frequent than the times that I feel good. And that hurts. I don’t like that. Despite putting on a smile and going out to do something, I am finding it harder and harder to force aside the feeling of discomfort. It’s frustrating because I want nothing more than a sense of normalcy, for my family to feel comfortable going out with me and enjoying our time together, rather than worrying if I am doing ok. I know they will worry either way, it’s just hard to come to terms with the fact that my new normal changes by the day.

Tonight Jacob asked me if he could bring me to the doctor to feel better. While his innocence warms my heart, it stings for him to know that I’m not feeling well. I told him that I went to the doctor and have medicine to help me get better. He squealed in excitement at that and hugged me big. He exclaimed, “Yay!! You get better! Did you see Dr T?” I laughed at his reference to his pediatrician (it amazes me what he remembers!) and held back tears, knowing that I will never get better despite his excitement.

I don’t share this for pity or to cause concern. I am not giving up and I know how very blessed that I am – if the last week has shown me nothing else, it’s that I am truly blessed. I share this because it is the reality of how I feel in this moment. Cancer sucks. It’s not all pink and frilly, sprinkled with rainbows & butterflies with a dash of survivorship. It’s constant pain, a forced smile and a lack of appetite. It’s a hope for a good day, the need to not have to nap, and to sleep through the night without waking up in pain.

It’s not letting my family see the struggle or witness the constant discomfort. It’s being afraid to make plans for the future, out of fear of how I will feel. It’s wondering if I will truly feel worse than I do during my worst moments now.

But, I will push all of those thoughts and feelings of discomfort aside. I will hug my boys and snuggle them to sleep. I will watch them breath deeply with sleep, knowing that for now I am blessed to wake up by their side and embrace another day with them. That, in itself, is one of the biggest blessings of all.

💚

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Today we celebrate the day Joey was born. It’s crazy to think that we have only celebrated this day together 14 times because that doesn’t even begin to scratch the surface of how much celebrating this man deserves.

When we first started dating, the path of our life together was laid out in front of us. The possibilities seemed endless and it was just a matter of choosing what we wanted to do or focus on. Whether it was buying a house and all the work that goes into it or owning only a motorcycle to get the two of us around to jobs and school or preparing to have a little person in our lives – this man has always stood by my side and never wavered. No one would ever expect that when they commit their life to another person, that it could mean having to deal with a terminal illness. Wanting to continue living your life while sharing that life with a disease that fights harder than anything you’ve experienced…it is not only exhausting mentally & physically, it is scary.
And yet this man doesn’t flinch. He continues to fight along side of me, always. He attends every appointment, asks all the right questions and cares for me whether I ask for help or not. Somewhere in the mix of all that chaos, he continues to be a father, a husband, a son, a friend- and so much more. Not only does he do all of these things, he is amazing at each and every one of them.

This man is my protector, my confidant, my comedian, my psychiatrist…he is my best friend. I can’t imagine sharing this crazy life with anyone else in the entire world.

I am feisty, irrational and weird. I have moments of insanity, complete breakdowns and tears of laughter. I cannot possibly be easy to love and yet here he is…by my side every step of the way.

Happy birthday, my love. I love you with all of my heart. Always.

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I started thinking about new year’s resolutions a few weeks before 2016 ended. I had a few things in mind…not so much resolutions but things that I wanted to change in my life. Time slipped by and these got away from me a bit. I kept meaning to implement these changes or make progress on them but it was never at the top of my list. The last few days, I was reminded that time will always continue to pass. I will always find an excuse or a reason not to fit something in or to change priorities. If I don’t implement the goals that I want to see, then who will? No more excuses.

I looked at my goals for 2016 and for the most part, I was successful in the things that I was able to control. Being re-diagnosed with Stage 4 doesn’t necessarily change my goals but it does change the perspective that I have when making them. A lot of things that popped in my head are changes that I’ve been wanting to make anyway and just haven’t gotten around to it. So wrapping them up with a pretty green bow and calling them 2017 Goals is the way I’m incorporating them into my life. It is Chinese New Year today, after all! 😊

One of the goals that I set for us is my One Line a Day book. Another is sleeping routines.

I was gifted these books by two different ladies at the end of 2015. They are 5 year journals but you only write a few lines for each day. It’s usually something memorable that happened or something fun that we did. Or maybe we had a visitor or Jacob did something I never want to forget. I’m pretty good about keeping up with them, though sometimes I fall behind and I’m struggling to remember what funny or special thing happened a few days ago. Having a memory that is failing does not make this an easy task. One goal this year was to include Jacob in these entries each day. He’s talked about it before and I’ve asked him what to include but I wanted it to be something he looks forward to each night. Since it’s a new year, this time when we open the book to a new day, we have last years entry to read. It’s exciting to reminisce on what we did this day last year or where Jacob was developmentally.

One of the comments that filled almost every day for the first week of the year was about Jacob sleeping in his own bed. Nap time, bed time – even sleeping through the night! My goodness, it was going so well last year – what happened?! Radiation in April/May, that’s what. Halfway through and I was too exhausted for middle of the night wake ups or hour-long (and then some) bedtimes. Coming into our bed in the early morning turned into halfway through the night, turned into barely an hour in, turned into “Bedtime, Jacob! Hop in between Momma & Dad-dad.” The rest is history.

I love Jacob sleeping in our bed – I do! He is such a good snuggler, he hugs me for no reason and, well, there is nothing quite like waking up to his smiling face telling me good morning (“it’s not too dark!”). But he often wakes up before he should because Joe & I are getting ready for the day. Or he goes to bed too late because we are finishing something up before bed. For those reasons and more, we felt like it was time to try his bed again.

We have been talking about it with him a lot, especially when we were on the cruise and going home to his big-boy bed. But we haven’t made any actual attemps yet. So this afternoon when Joe asked him where he wanted to take a nap, we were both surprised that his answer was “my room”.

It took a while, a walk around his room, lots of snuggles and some singing but it happened. After some ninja moves to leave the room, we were shocked that he slept for his entire 2 hour nap in his bed. Dare we try bedtime too?!

Since Jacob was in my tummy, I have wanted to start reading him different book series at night. Many are books that I’ve been wanting to read and others are from my childhood. I visited a used book store at one point when he was only a few months old and bought treasures just for that. They have been patiently waiting in his closet since, for me to look at every time I opened the door.

Hours before bed, we started to tell him about our new routine. We continued to prepare him all night. When his jammies were on and his teeth were brushed, we asked him where he was sleeping tonight, “my room”.

And so it began. We laid in his crib and I read the first chapter of Harry Potter to him. He was fidgety at first, rolled around a lot, talked to his animals as well as himself…and eventually fell asleep. I don’t know that he actually listened to the chapter at all but tonight was priceless to me.

Eventually, I want to record myself reading to him but for now, we have completed the first of many nighttime readings that are still to come.

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It’s crazy that just a week ago tonight, we were enjoying our first night on our cruise. Tonight, we are snuggled together, home safe.

The trip was wonderful. Joe’s parents accompanied us and we took the Norwegian Epic for a week visiting Cozumel, Grand Cayman, Jamaica and their private island in the Bahamas. We met wonderful people from all over the world, we tried new things in places that we have never visited and we took time to relax and enjoyed the open water on our balcony.

Jacob loved every moment. He swam in the hot tub, played in the splash pad and let the waves crash over him in the ocean. He made friends with all the staff, giving big hugs before we left. Joe & I enjoyed a date night and spent a few hours alone while we enjoyed dinner and (re)explored the ship. We made so many incredible memories.

I won’t pretend that the week was perfect but it was for us. We adjusted our vacation to ensure none of us were uncomfortable. I took it easy & napped with Jacob almost every day, I have pain in my chest still but hopefully that will eventually go away and I didn’t swim quite as much as I may have before because of the wound in my chest. But that doesn’t mean that this trip wasn’t amazing – because it was.

Tonight, we are home safe and were able to relax today and settle back in. Though we have lots to do before heading back to work & school, we will enjoy the last few moments of vacation before heading back into our routines again.

Hopefully you have all had a wonderful & fun week and you are all able to enjoy this weekend!! Keep spreading the love my friends.

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We awoke Wednesday morning to the boat rocking heavily and the windows being pelted with a bit of rain. The wind was intensely whipping about the balcony as well. The sky was a little angry but it all faded quickly and the sun came out from behind the clouds.

We ventured off of the boat and chatted with a few people but didn’t love the tours being offered just yet. We wandered outside of the port and started chatting with a man about what our goals were for the day. We ended up meeting a man named Dwight and having him show us the island.

We rode through a bit of the rainforest, traveled up the mountains and saw the spectacular views looking out over the ocean. Stopping to smell the leaves of different plants (all spice and lemongrass grow freely!), we also learned about the different fruit trees growing around the island. We stopped by the local Dunn River Falls and peeked at the water cascading over the rocks.

Next, we headed to Bamboo Blu beach and set up – Jacob couldn’t get into the water fast enough! It was that beautiful, crystal blue again and our sweet boy couldn’t wait to run into the small waves.

Joe & I left Jacob to play in the waves for a bit while we went on an adventure. It’s something that I put on my list of things to do before turning 30 but never actually did. It’s something I’ve seen pictures of and thought – someday I will! Well, today was that day. Joe & I went horseback riding.

I remember a week long trip in Girl Scouts when I was young. We went to a farm of sorts and one of the activities that we did a few times throughout the week was horseback riding. I remember feeling as if I was high off of the ground and a little afraid of the height but truly enjoying the experience.

Dwight took us to two local guys just up the road from the beach. We received a great price for the hour that we wanted to ride. We hopped on our horses, Crystal and Cindy, and I had a moment of panic when she first started moving.

What are you thinking?! This is so high! What if you fall off?!

But I swallowed those fears, put on a big smile and braced the moment. I will do this! So off we went.

Joe & I traveled up the mountains through the town where the locals live, saw goats – young and old – eating the tall grass, saw a community garden where anyone can grab fresh fruits or vegetables for their meal, they simply need to replace it with a seed or two and Joe even picked me a bright pink hibiscus. Our guides told us stories about the town and shared the different things they do to keep busy. At the top, we saw the breathtaking view of the water below. We headed down the mountain through the town and into the some of the wooded area by the beach. We learned about the trees that only grow in the shade and I may have bumped my head on a few branches along the way, despite the warning of doing just that.

Eventually the trees opened up to show the dazzling blue waves of the ocean. Our guides stood back while Joe & I rode our horses into the water. It was clear that Crystal & Cindy love the water as much as we do. They trotted through the waves, the water lapping up over our thighs. They stopped to play in the water, flicking it up over their heads and onto us. I don’t think the smile came off either of us the entire time.

After riding in the water a bit and learning about local fishing, we headed back. I trotted up ahead of Joe & turned around to see him racing up the trail behind me. His grin was from ear to ear. The trip was amazing. It may have only been an hour of our time but the memories are completely priceless.

Dwight brought us back to the beach where Grandma & Grandpa were playing amongst the waves with little man. He wasn’t too interested in chatting with us upon our return, as he had his own ear-to-ear smile from the ocean. I sat with him in the waves, while we picked out the big & little waves and braced ourselves for when the water rushed over us. We said “ew!” at the seaweed floating in from the reef and dug holes in the sand. The hours flew by and before we knew it, it was time to head back to the ship.

Dwight met us and drove us back, telling us more about the town on the way. He was a wonderful tour guide and I would absolutely book him again if we return. (And you should too if you head to Ocho Rios!).

Once on the ship, Jacob took a bath overlooking the water. Despite his shower before leaving the beach, another pound of sand may have come out of his bathing suit. He loved holding the spray shower head over him and “wash my chest and wash my legs and wash by tooshie…”. Seriously, just too cute!